Thursday, July 10, 2008

Outpatient Visit Today

We had our regular outpatient visit at the Children's Hospital today. Ethan does so well when we go. We are usually there for a few hours and he has so much fun being around everyone. I know that I am his mom, and it's only natural for me to say this.... but.... he is sooooo adorable! He is truly such a good baby, such an easy baby (outside of the obvious circumstances he faces daily). By the way, we tried sweet potatoes and peas this afternoon. The peas made him gag - literally. But the sweet potatoes he liked!

Anyway, I had a good conversation with his primary oncologist this morning. He said they've actually started debating once again whether or not it was beneficial to remove Ethan's spleen (side note: when I heard that, my heart jumped as I was reminded that it is God who is directing the steps of Ethan's treatment). He said he spoke with the surgeon, and the transplant doctor in Boston as well as a JMML specialist in Philly - and they are not sure that removing the spleen is actually more beneficial to his overall leukemia than leaving it in. They are comfortable with the fact that removing the spleen would aid in the transplant, but they also acknowledge that the spleen surgery would leave Ethan vulnerable to a life-threatening infection in the blood (sepsis).

The surgeon advised the oncologists that though it is rare, it is possible of Ethan getting such an infection from the surgery and to be sure that the surgery was necessary to Ethan's overall treatment (leading to his being cured of cancer). The oncologist shared with me that there is not enough evidence to prove that Ethan's spleen really needs to come out in order for him to avoid relapse of cancer down the road. There are JMML patients who relapse whether they have a spleen or not, and likewise there are patients that do not relapse whether they have a spleen or not, so the overall benefit, if any, is not overwhelmingly evident. However, a large spleen can interfere with the transplant process - that much they do know. The spleen being large can affect the lungs ability to function due to crowding, and among a few other things, it can eat up the new cells making it longer for the donor cells to reach the necessary areas of Ethan's body. So common sense, in that regard, tells you to remove the spleen to avoid those types of complications. However, the question remains, is it a greater risk to leave the spleen in and hope that those complications aren't a serious factor during the transplant.... or do you remove the spleen and hope that the blood infection doesn't occur?

Well, apparently THAT question didn't sit well with Ethan's doctor and he wanted to do more "digging". Can I just say, that I am so thankful that he has taken such detailed care of our son! I am so impressed that Ethan's doctors are treating him with the same concern and delicacy as we are, being his parents. I thanked the Lord for that very thing as I left the hospital today.

But I digress... the specialist in Philly said that they do partial spleen removals when they have JMML patients. That reduces the risk of sepsis (blood infection), and gives a better result during transplant (lessens the above noted risks) than having the whole spleen. I liked the sound of all of that. AND, I asked if the spleen was an organ that would grow back down the road, and he said yes. So, Ethan could one day have a fully functioning spleen - which took care of the anxiety I had about all of that!

Ethan's oncologist and the surgeon have requested a meeting with the Cancer/Tumor and Surgeon Board of Specialists on Tuesday to discuss Ethan's scenario. With all the wisdom and knowledge that will be in that room, Ethan's doctor is certain they will come up with a decision that's best for Ethan - taking everything about his case into consideration. The decision before them/us is either to leave the spleen alone, or to remove only part of it. Please be in prayer for this meeting next Tuesday. I want a confidence to arise, one way or another. I am so encouraged that this is being looked into further and that the Lord reminded me today (again), that He is fully engaged in each step of this process.

I have rough days.

And there are set backs to my faith at times.

But even when I can't get out of my own way, and I choose to pout rather than see that God might still be working....

He takes the time to remind me that He is still working.... working diligently.... on Ethan's behalf, on mine, and on Adam's. He is FOR our precious little family of 3. Never against us.

Ethan and I will go back on Monday for another outpatient appointment (his counts were good enough today that no transfusion was needed!) At that time, his doctor wants to talk to me about starting a type of treatment plan over the next couple of weeks before we move to transplant (regardless of the decision that's made about the spleen during their meeting the following day). I'm not sure what that conversation will involve, but please pray for wisdom for both the doctor and myself so that when we talk on Monday - the best and correct decision is made to ensure Ethan stays healthy.

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Joshua 1:9 - Have I not commanded you? Be strong and of good courage; do not be afraid, nor be dismayed, for the LORD your God is with you wherever you go.

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p.s. - After I posted the above verse, I decided to do a quick search on the meaning of "dismayed". I am certainly familiar with the word, but curiosity got the best of me anyway:

dis·may, dis·mayed, dis·may·ing, dis·mays - courtesy of dictionary.com:

1. To destroy the courage or resolution of by exciting dread or apprehension.
2. To cause to lose enthusiasm; disillusion:

3. To upset or alarm.

Dismayed is how I had been feeling the past couple of days. But today, He is reminding me to be strong, to not lost enthusiasm... He is with me - with us - wherever we go.

5 comments:

Anonymous said...

Dear Kasey,

I follow your post everyday and can not wait to read your faith in all that you do. Just want to let you know that I pray daily for Ethan and your family. Your post gives me strength as I lost my dad a couple of months ago and go through many emotions of anger, guilt, sad, and everytime I read your post you remind me that GOD had his plan for my dad long before and nothing I could have done would have changed the outcome. Sometimes in the sorrow I forget and let the devil step in and take over. And then I read how strong you and your faith is reminds me to not let that evil take over to turn to GOD for the strength and guidance. Thank you so much for your help with faith. You are a remarkable MOM and someday when Ethan graduates you will see the mark you and Adam will leave on his growing up being such good parents and christians.

Janelle & Ella said...

Kasey, I am so happy for this day of victory! It is such a relief to know that you have such great doctors that are doing everything they can for sweet Ethan! They are a Godsend. I will be praying for your appt. with your doctor on Monday and then the meeting on Tuesday!

Natalie Ezelle said...

Kasey,

What type of transplant is Ethan going to get? The bone marrow or the other one? Or do you not know yet?

Natalie

Megan said...

First, I love the pictures of Ethan eating his food. Those looks are priceless!!!! What a cutie pie.
Wow, God never stops working does he? I think this is awesome that they are re-visiting this and taking it to the board. I feel confident you will be 100% at peace with the final result. God is making sure they are taking the right steps and leading them all to do the right thing for Ethan. Thank you Lord for Ethan's good numbers so he didn't have to get more blood. God keeps answering all our prayers and will continue to do so. We will be in prayer for you all regarding Monday and Tuesday's meetings. I am looking forward to seeing what God does next. We are sending lots of hugs your way. Please give lots of kisses to Ethan for us. God Bless your family.
Love,
Megan

The Queen Diva said...

you truly are an incredible woman. I know the Grace of God sustains you daily even in your difficult, honest moments or pouring your heart out to him. He hears. Isaiah 41:10.."Do not be afraid for I am with you. Do not be DISMAYED for I am YOUR GOD! I will help you and strengthen you. I will uphold you with my righteous right hand." How I pray that God Almighty will lift you up and take away your fear..and in it's place..fill you with such peace..the peace that passes understanding. may your heart be filled with things that are true, noble, right,lovely, pure and admirable. if there is anything excellent or praiseworthy...I pray that your mind would be filled with THESE things.